Sjogrens vs Lupus: Smackdown

OK this is going to be a long rant. I'm mad.

I am a regular contributor on Allexperts.com, where people can write in about, well, anything, and ask an expert their question. I signed up as an expert in lupus. From the angle of living with it for 20 years and trying everything under the sun to deal with it. And some of it working quite well. But that's another post and not part of this rant.



What saddens me is the question I get the most often. It's not "I have lupus- now what?" or "Is there anything I change in my lifestyle to help reduce my need for medication? or "How do I keep my spirits up?" or "Hey Carla why are you so awesome?".... No, the question I get the most often (in various iterations) is... (have you guessed yet?)- "Why doesn't my doctor want to diagnose me with lupus?"



Now at the risk of sounding like a "back in my day" story... Back in my day, if you had a positive ANA test and 4 of the 11 classic lupus symptoms (see list here http://tinyurl.com/3lwpa78 ), you got diagnosed with lupus. Of course this was after 2-5 years of schlepping around to various doctors being misdiagnosed before anyone even thought to look for lupus. But once they started looking for it, now all you had to do to qualify to join the fabulous club of lupies was have 4 symptoms and a positive ANA.


Not anymore. I guess the lupus club has too many members now, much like how academia has too many PhDs. Now they have to figure out a way to weed out candidates and discourage them (raise the minimum SAT score, take fewer candidates, jack up tuition, act like an ass so they don't want to stick around...). All in hopes that they either give up and go away (gee, also reminds me of applying for disability) or it takes them so long to finish their degree that you're already retired when they graduate.

Maybe the CDC has put a cap on how many new lupus cases are allowed a year, lest we have an epidemic reported (never mind that we have an actual epidemic- just don't let it show up on paper!). Maybe doctors have been watching too many episodes of House "it's never lupus" MD and have started to believe it really isn't ever lupus. All I know is if you want a lupus diagnosis in 2011, you're in for an uphill battle. Oh yeah, on top of your uphill health battle. Because being sick is apparently not enough to have to deal with. Now you have to diagnose yourself then build a case and convince them to give you the diagnosis you went and figured out for yourself. And then pay them for the privilege.

I suppose one reason I was ultimately diagnosed with lupus, and very definitively, and despite the fact that I am also positive for Sjogren's, was that I had 10 of the 11 classic lupus symptoms, plus all 4 "bonus" symptoms. (here's the list again: http://tinyurl.com/3lwpa78 )

I wish that story weren't so common. It's terrible how people suffer because they aren't listened to carefully enough.

20 years ago, when I got sick, not enough doctors would think to even look for lupus. Now it seems like they've all heard of it, but all they've heard is "it's never lupus- call it something else." I would love to get to the bottom of this trend. Why are they so resistant to giving a lupus diagnosis? Someone please tell me. I'm sure the answer will enrage me (even further), but I want to know.

It still happens even after getting diagnosed- they want to un-diagnose you! I've been living with this for 20 years and still every time I see a new doctor, they don't believe that I have lupus- even when I bring them my 10 pounds' worth of old medical records. They run all the tests all over again. Seriously, they look at me accusing and and say "Who told you you had lupus?" I'm like, "You want the list alphabetically or chronologically?"

Why would I lie about such an annoying and socially disrespected disease? If I picked a disease I'd pick something that's not a punchline. But they have to run their tests and then march back in the next day and announce to me that I have lupus. Wow, how *ever* did you figure that out, you mad genius?

The current favorite substitute for a lupus diagnosis that I hear over and over from patients writing to me on Allexperts.com is Sjogrens. (and sometimes "Mixed Connective Tissue Disease").

Being diagnosed with Sjogren's does NOT mean you don't have lupus. You can absolutely have both. I have Sjogren's and Lupus- and also Raynaud's. All 3 are autoimmune. It's very common to have more than one autoimmune disorder. Some say I have "secondary Sjogren's" - meaning the lupus is the primary disease. I would agree with that, but whatever.

Let's break it down and cross-reference the symptoms lists. There is some overlap. Short break from rant while we insert lists.

Sjogren's syndrome symptoms include:

• dry eyes
• dry mouth
• joint pain or inflammation (arthritis)
• Raynaud's phenomenon
• lung inflammation
• lymph node enlargement
• kidney, nerve, and muscle disease

(from http://www.medicinenet.com/sjogrens_syndrome/page2.htm#3whatare)

lupus symptoms which overlap with Sjogren's symptoms:

•  Raynaud’s phenomenon
•  joint pain/ inflammation
•  lung inflammation of the lining around the lungs (pleuritis)
•  Kidney disorder – persistent protein or cellular casts in the urine
•  Neurological (nerve) disorder – seizures or psychosis

   

lupus symptoms which do NOT overlap with Sjogrens:

• Fever (over 100° F)
• Extreme fatigue
• Hair loss
• Inflammation of heart lining
• Malar rash – a rash over the cheeks and nose, often in the shape of a butterfly
• Discoid rash – a rash that appears as red, raised, disk-shaped patches
• Photosensitivity – a reaction to sun or light that causes a skin rash to appear or get worse
• Oral ulcers – sores appearing in the mouth
• Blood disorder – anemia (low red blood cell count), leukopenia (low white blood cell count),   lymphopenia (low level of specific white blood cells), or thrombocytopenia (low platelet count)
• Immunologic disorder – abnormal anti-double-stranded DNA or anti-Sm, positive antiphospholipid antibodies
• Abnormal antinuclear antibody (ANA)

If you have any of these in this second list, definitely be sure to mention them to your pill pusher. I mean doctor.

A few things to consider asking for:

• kidney function tests.  Sjogren's or lupus can affect kidneys.
• a second opinion. On that visit, I suggest you bring a list of all your symptoms so you don't forget to mention anything. I would put a star next to any symptom on your list that cannot be explained by Sjogren's. If that doctor also insists you only have Sjogren's and not lupus, ask him to please explain what he thinks is causing your non-Sjogren's symptoms- especially if you have rashes, hair loss, anemia, fever (and of course your positive ANA test).
• consider bringing a trusted friend to your appointment with you. Doctors are used to that.

End of rant, and a few reasonable parting words:

Lastly, try not to be confrontational with the doctor. If you push, they usually push back. Try using language like "I'm concerned" "Can you help me figure out" and "do you think...?" We want a spirit of cooperation (not submission, cooperation) and so try to use that kind of cooperative language, even though you must be frustrated. Take a deep breath, and

And if you are a praying person, that doesn't hurt either.

My best wishes to those who are struggling for a proper diagnosis-

And one last thing...  %$#*&*#*!!

Carla

Carla Ulbrich, The Singing Patient
_____________
www.thesingingpatient.com
www.bestpossibleme.com - health coaching
www.youtube.com/user/carlaulbrich - funny songs
"I am reading Carla's book How Can You NOT Laugh at a Time Like This? and loving it. I LOVE Carla's songwriting, so I'm not surprised that her prose writing is as smart, funny, and insightful as her music." - Christine Lavin

get the book here: http://tinyurl.com/348hroc

13 Diseases that are Difficult to diagnose

Here we go again. Those of us with lupus are on another list of "diseases that are hard to diagnose."

Check it out:
http://www.insurancequotes.org/13-most-difficult-diseases-to-diagnose

The list includes:
- ALS (Lou Gherig's)
- Fibromyalgia
- Lupus
- Crohn's
- Cushing's Disease (which is basically the same effect as being on a lot of prednisone, only your body is creating the cortisol)
- Celiac Disease
- Chronic Fatigue
- Lyme Disease
- Parkinson's
- depression and bipolar disorder
- hypothyroidism
- MS
- Mesothelioma


IMO, this article, while interesting and a good jumping off point for debate, is full of excuses.
Patients are needlessly suffering untreated for years on end not because these diseases are hard to diagnose but because our system and its priorities are seriously messed up.

And now, my 9 *real* reasons these 13 diseases are hard to diagnose:

1- Assumptions. Doctors don't take patients' concerns seriously and assume they are "just depressed," so it takes several visits before they even start looking for an actual physical problem. This is markedly worse when the patient is female. If you aren't bleeding profusely, you're probably imagining your problems and you just want attention (oh yeah the doctor's office is where I go when I want attention. HA!)

2- Ridiculously short time with patients. The cost of overhead (rent, office staff, etc.) is so high and insurance companies put the squeeze so hard on doctors by discounting allowable payouts, that if doctors spend more than 8 minutes with a patient, the doctor is losing money.

3- Priorities are upside-down. Doctors do not realize or believe they are in the business of customer service, and that without patients, they have no medical practice. And yet, when we go into their offices, we are last priority. After the office staff, the insurance company, the pharmacist, the lab techs, the drug reps and the pizza delivery guy have all been taken care of... OK, now we can see you, Mrs. Jones. Oh she left? Well there's more where she came from. She's probably a hypochondriac anyhow.

4- Patriarchal CEO attitude. Most American doctors want to operate in a top-down, giving orders kind of manner, rather than a cooperative partnership with patients, even though the patients may have more knowledge than the doctor on their own condition. Some doctors are threatened by empowered knowledgeable patients and get angry when we go looking for answers in chat groups and on Web MD. I had a doctor fire me as a patient because she didn't like me "challenging her authority" by bringing in articles and asking questions. And she mocked me for trying alternative medicine. Many don't want to listen to us when we ask for specific tests or for them to consider we might have a certain disease. Look I've got all day to check it out and my life depends on it, so let me be involved!

5- Poor listening. American doctors (as a group, with some exceptions, but as a group) have terrible listening skills. How can you figure out what is wrong with me if you won't listen? I had doctors tell me I had bronchitis- and I wasn't coughing! I had no phlegm! I've had bronchitis at least a dozen times, and this was not bronchitis. But they wouldn't listen. Then they gave me antibiotics which made me even sicker.

6- Gadget-happy. American doctors rely so much on technology and fancy tests that they have lost touch with their intuition. They have a reputation among the international community of being test-happy and making every event far more expensive than necessary.

7- For-profit health care. As long as making a buck off people's suffering is the number one priority- and it is for big pharma, insurance companies, and even hospitals- the priorities are going to be screwed up.  The kindest doctors in the world can only operate so effectively inside this system. If they want to be free of the demands of these hungry hungry hippos, they have to operate a cash-only, no insurance, no office staff (no overhead) practice. And then they can spend all the time they like with patients, relax, and let it be all about the patient's suffering and how they can ease or end it.

8- It's never lupus. Thanks a lot House, MD, for your one-man led anti-awareness campaign.

9- Reluctance to diagnose. doctors don't *want* to diagnose these diseases. Lately it seems to be harder and harder to get and to hang onto a lupus diagnosis. I can't speak to whether that is the case with MS or ALS or Parkinson's, but from what I'm hearing from other lupus patients, doctors seem to be going out of their way to avoid diagnosing people with lupus, and even trying to un-diagnose people with lupus who have been living with it for years. It used to be simple- if you have 4 of the 11 classic symptoms, you were diagnosed with lupus. Now it seems they want you to have all 11 plus certain blood tests (ANA, anti-DNA, C-reactive protein, etc.). It's like they've run out of room so they had to raise the standards. Like when a university has too many qualified applicants, so they raise the minimum SAT score.

I don't know if the government is pressuring doctors to avoid the lupus diagnosis so they don't have to give disability status, or if the CDC doesn't like the statistical trend of exploding rate of autoimmunity, so instead of making people healthier they tweak the numbers by refusing to diagnose... Call me a conspiracy theorist, but there's something weird and fishy going on here when the same symptoms that would have got you diagnosed 20 years ago are no longer sufficient for definitive diagnosis. I'd really like to know what's going on behind closed doors on this one.


And those, my friends, are my 9 reasons which these 13 (and many other) diseases are supposedly hard to diagnose.

Carla Ulbrich
The Singing Patient
www.thesingingpatient.com
Author of "How Can You NOT Laugh at a Time Like This?"
get the book! http://tinyurl.com/348hroc

The Straight Poop

OK, people, it's time to give you the straight poop. Well, actually it's more likely shaped like a question mark. Yesterday, I ate so many carrots, including a glass of carrot juice that today my poop was orange. Upon sharing this, I heard back from my friends who eat lots of spinach and get green poop, and those who eat loads of beets and have fushia poop. Who says poop has to be brown? Poop the rainbow my friends!

The great thing about eating something brightly colored, then seeing it in your poop, is that you now know how long it takes food to pass through your digestive system. If you've ever changed diapers, you know that just a few hours after feeding the baby peas, you get green poop. Healthy babies digest very quickly.

The fact is, as we get older, most of us here in the US don't poop enough, and we don't look at our poop, and neither do our doctors. But poop and poop habits (or lack thereof) can tell you a lot about a person's health. So let's talk poop.

According to Dr. Oz, who talks about poop a LOT on his show, "You should see a doctor if you poop more than four times a day or if you don’t go to the bathroom at least every other day.   To help cure constipation eat things like fiber, probiotics (yogurt, kefir) and drink lots of water.  You should also read Dr Oz’s segment on Constipation Causes, because there are other things that can constipate you, even if you drink lots of water and eat plenty of fiber.  Also, overuse of laxatives can cause constipation."

Know what else causes constipation? Narcotics.Yes, voice of experience here.

Know what can cause the other extreme, over-pooping? Celiac disease, IBS, Crohn's, and food sensitivities, such as gluten intolerance or lactose intolerance (anyone here watch the Big Bang Theory where Leonard always has a poopfest if he eats dairy? New meaning to "big bang"...). And in my experience, overconsumption of caffeine. Pooparama!

Speaking of Dr. Oz and his frequent poop-themed segments, I thought bodily functions were not allowed on network TV... unless, I guess, you have a white lab coat on. hmm, maybe if I sing my poop songs in a white lab coat, I can get onto more radio stations. Wait... you can't see my clothes on the radio...

Well, this is internet, and for now it's uncensored, so please enjoy today's theme song, The Colon. Keep eating healthy fiber, drinking plenty of water, and enjoying your quality time in the small room with one seat (hopefully only one seat).

Happy healthy pooping to you all!
And in the spirit of Triumph the Insult Dog, this was a great blog topic....
for me to POOP ON!



Carla Ulbrich
The Singing Patient
www.thesingingpatient.com
Author of "How Can You NOT Laugh at a Time Like This?"
http://tinyurl.com/348hroc

Fat, Sick, and Nearly Dead

Fat, Sick and Nearly Dead! I can relate to that. Except I was super-skinny, sick and nearly dead. Then I went on prednisone and that fixed the skinny part quick!(Thankfully I've been off it now for 4 years).

Fat, Sick and Nearly Dead is a great new documentary about Joe Cross, who was 100 pounds overweight and suffering from a painful autoimmune disease. And also on prednisone. I just got back from a viewing of the movie at Whole Foods, where Joe himself was on hand to answer questions and lead discussion.

In my house, spoiling movies by telling too much about what happens is a big no-no, punishable by the other person getting to choose the next 6 movies.  But I can tell you what's on the movie's website, which is that he decides to go on a 60-day juice fast and travel across the US, talking to people along the way about food, lifestyle choices, and juicing. Then he meets a guy at a truck stop who has the same exact rare autoimmune disease. It's a great story.

Joe is spreading the message about the incredible healing power of fruits and vegetables, and also of fasting (juice fasting that is). He is changing hearts and lives. He's an inspiration. He's also Australian. And.. tall. (well, I'm only 5'2"). Post-movie at the Whole Foods in Princeton, NJ:

The movie is inspiring, eye-opening, and at times, humorous and light-hearted. He doesn't preach. He just leads by example.

You can buy the DVD at his website, or watch it on netflix (available at netflix via streaming only at present). http://www.fatsickandnearlydead.com/reviews/

Cheers!

Carla
Carla Ulbrich, The Singing Patient
www.thesingingpatient.com
Author of "How Can You NOT Laugh at a Time Like This?"
http://tinyurl.com/348hroc

Primary Food

Do you ever wonder why some people can just eat junk food and sugar, and smoke cigars, and still be healthy? It hardly seems fair. And then you meet some people who are super-careful with everything they eat and they seem so miserable and look pale and weak.

Often when we see something like this we chalk it up to genetics or good luck, but there is one factor that can’t be overlooked, and that factor is referred to by Joshua Rosenthal (head of the school Institute for Integrative Nutrition) as Primary Food.

Primary food... what does that mean? It means your work, your relationships, the fun you have, how meaningful your life is in general, and how much you are enjoying it.

It seems that how happy you are with your life may be even more important than what you put in your mouth, as far as determining how healthy you are.

Think about it... the times you’ve been in love, or consumed by joyful work, such as making music, or doing art, or anything creative- you forgot all about food, didn’t you? And yet you felt great.

My acupuncturist once said to me that you send little “live” and “die” messages from your brain to your body all day long. So it’s really important that you have something to live for. Not just something to *not die* for (people need me at work and at home) but something to *live* for (I can’t wait to start on that project, or go camping with my kids, etc.).

So that, my friends is why I’ve been absent from the blogosphere for the last 3 weeks. I decided to fill up on some primary food, because my life was getting out of balance. Too much grunt work at the computer (zillions of e mails, networking, book promo, etc.) and not enough joy.

I decided to go back to this awesome music camp in New Mexico where I taught during the summer 1999-2004 and have myself a week of fun, sun, mountains, stars, great kids, awesome fellowship with other teachers and music, music, music. I’m pooped, my clothes are covered in camp dust, and I had a blast. I feel full.

So... primary food! What brings you joy? Who are the meaningful relationships in your life, and are you getting enough time with those people? Can you schedule more Vitamin F (fun) into your week? Tell me about your primary food-  who in your life fills you up, what you like to do that makes you feel alive and happy to the core, and so on.